Pain and Pudding, Music and Not Grumbling.

This week has been very hard.  A week of difficult decisions, a week of stepping out of a dance that does nobody any good.  A week of being tough, and I am not tough.  Well, I am now, but I have to work up to it.  I wasn't born with the three strikes and you're out gene, I don't have the Clint Eastwood glint in my eye.  I am co operative, I am stumped by aggression and bad behaviour.  The week has been full, and there have been dreadful moments, and wonderful moments.  And moments of sheer British stiff upper lip-ness.  Those moments involved my father, his sister, and her husband, all in their mid to late 80s in a posh restaurant in Winchester.  More on that later.  This account will be split into three parts.

1. Pain
2. Beauty
3. Mustn't Grumble

1.  Pain.  

My oldest boy has been choosing danger and a lifestyle that is beyond my help.  This week, I found myself closing the doors, and telling him that he was on his own.  I don't remember making the decision, I only remember having done it.  I didn't like it, and my heart breaks at the thought of my beautiful boy suffering, of his vulnerability, his youth and his state of mind.  But I need some help myself, and I am afraid, and I am not helping either him, myself, or my household.  And so, he is on his own.  There have been some very good people who have held my hand, and reminded me that I have not locked the door, I have just pulled it closed, and on the one side my son will follow his choices, and on the other, I will recover my soul.  The door can be opened at any time, but my son will take a long time to understand that the power to open it is in his hands, that I will be holding a safe space for him on my side, it will take time and experience for him to understand that true love will do this.

On the one hand, I am exhausted with the relief that he won't be in the house any more.  On the other hand, I think, where is this child that was so keen on cars, that if we were in a traffic jam on the M25, he would be delighted and impressed?  I saw someone who looked like him at a railway station a few years ago, haggard and scruffy and ill, and had a dreadful premonition.  I wonder, if I paint him in my studio as a saint, will he come back?


2.  Beauty.

My dear friend, Musician Extraordinaire Lizzie Hornby, has recorded a dedicated new piece called A Graceful Death, for the exhibition.  Listen to the notes like a heartbeat running through the piece, halting, and pausing, and stopping before starting again. Like life dwindling, and rekindling, and the heart patiently trying to continue with life.

http://www.youtube.com/watch?v=kD3-qoqVh38&feature=youtu.be

I asked Lizzie if I can use her music for the exhibition because it is beautiful and it does not lead me to laugh or cry.  It is music that is so much itself, that it commands my attention and carries me along with it.  I want music for the exhibition that does not create sentiment, nor make going to the exhibition like going to a weepy movie.  The exhibition needs to stand on its own, so that when you are there, your response it entirely your own. The music has to be special, and Lizzie's music is, to my mind, perfect.  Lizzie writes from her heart. She understands what I am doing, she is not swayed by it and she has used her talent and gifts to do her own thing alongside what I do, and so has created music that compliments A Graceful Death, and adds to the whole experience.  This title piece, that Lizzie has been working on over the past few months as the theme tune for AGD, has made me sure that God is good and lives in creativity and expression.  Lizzie is touring in the US at the moment.  She is also giving a concert for the A Graceful Death opening night in Bridport on the 1st of November this year.  And, while she is in the US, I am going to hide away in her cottage in Dorset for a while.  I think I win big time here.

Lizzie playing the piano at an art exhibition in Ditchling in West Sussex this Spring.  The piece she is playing is the one that started the whole thing off, and this became the music for AGD.  Now I have a dedicated piece of music called A Graceful Death to play alongside all her other work.  I am thrilled.

3.  Mustn't Grumble.

Esteemed Father and Excellent Son. Pudding was still uncomplicated here.

My brother Ralph and I took our esteemed father (82) to Winchester to visit his grand and memorable older sister and her husband (combined ages of Aunt and her husband about 172).  All was well, on this hot and dusty day, over lunch at an upmarket eatery, until I glanced at my Aunt who looked as if she was struggling not to rest her forehead in her plate of risotto.  "Do you want to go home, Aunt?" I said, to which she replied that she thought she ought to.  Before anyone could decide how this was best done, Aunt slid gloriously into her risotto and started snoring.  Quickly standing behind her and holding her head, I asked the waitress to get an ambulance, while Ralph took care of Esteemed Dad and Venerable Uncle.  "Is she still breathing?" the waitress asked me ( she many months pregnant, and calm as a cucumber), prompted by the emergency services on the phone.  Aunt looked paralytically drunk by this time, worryingly so, with her eyes half open and her head lolling into my hands.  "She is breathing!" we cried as Aunt delicately snored on.  "Lay her flat on the floor" the emergency services on the phone told the waitress to tell us, and so Ralph, some waiters and I, carried Aunt over the chair, and onto a hastily cleared space on the floor of the busy upmarket eatery in Winchester.

One lady left her table to come over and help, bless her.  Everyone else carried on eating. The lady who came over to help made sure Aunt was decent (Aunt is very decent), that Aunt's skirt and blouse were as smooth and elegant and as well presented as she could be as she lay under the table surrounded by jolly lunchers above.  As she came round, Aunt's first concern was that we all go back to the lunch table and finish our puddings.  At what point, I asked her, in all her training as a nurse, was she taught to leave elderly relatives semi conscious on the floor of restaurants in order to finish puddings? Aunt agreed that it wasn't done, and passed out again. And anyway, pudding had been ordered but had not, understandably, arrived.

And so we stayed on the floor, until the Ambulance came, I holding my gracious and formal Aunts head in my hands and stroking her hair, Ralph looking after Uncle and Dad and lunch carrying on around and above us as normal.  Uncle sat on a chair near Aunt, calmly watching and looking wise and serious.  Dad, who has memory problems, sat at the table looking extremely confused.  One minute we were all above the table having lunch, the next thing, half the party were under the table, and pudding was on hold.  Ralph was wonderful looking after him.

All ended well.  Aunt and Uncle are home after a spell in hospital, with a bit of rest, all will be back to normal. Dad suggested to Ralph as we left that we stop off en route from Winchester to London, for a pudding stop.  And so we did.  The moral of the story?  Mustn't grumble.  And always have pudding.

Today is a quiet day here for me in Bognor.  I shall mow the lawn, and tend my teeny meadow.  I shall think of my son and how this all came about.  My other son, and my daughter, are very supportive, as are local agencies around here.  But I cannot help feeling that Son is still only a child, and that I have said Go, Son, and die somewhere alone and unloved.  That is not the case, Son is loved.  He does not love himself, and is somewhere beyond me.  Until he comes back, I suppose I mustn't grumble.  And have some more pudding.

Pudding.  Made by Son for my birthday a few years ago.  It says Antonia in bananas. 

A Eureka Moment which includes Bongos and Verdi's Requiem.

I had a Eureka moment yesterday evening.  I glimpsed the nature of the divine in creativity.  I am not very connected to music, but I am going to concentrate on music right now, and the almost too fleeting moment, when I thought I caught the divine.  No great symphonies, no big concerts, just a moment in a church with friends, a choir with some bongos, and a burst of insight.

I have great difficulty with the certainty in, and the stories behind, religions. God seems to be a very good idea, and a jolly necessary concept.  But as a child, I was horrified by the idea that Man made God in his own image.  That set the cat amongst the pigeons, and for many a year, I was conscious that it was all the wrong way round, and that we, the people, were being fooled and God didn't make us at all, we made God.  Oh that bothered me so much.  How is this, I thought, that we made God and the church (I was raised a Catholic) is carrying on as if they hadn't heard and were sticking to the old story that God got there first, and made us.  "I'm a child," I thought, with rising panic, "and I know this, it's out there in black and white, what is wrong with them!"  This thinking manifested itself by causing a distance between me and music of any kind in the church, with hymns, choral music, and even big fancy Requiem Masses.  It caused a distance between me and any kind of religious music. I could love the effect, but I got stuck at the silliness of believing all the doctrines of the church, and I could not understand how anyone, who had the gift of music in them, could write music and songs around it.  And Verdi, who wrote my favourite Requiem, if he was so clever, what on earth was he doing writing a funeral mass?

I spent much of my life thinking that those who wrote for the church, about the church, and in the church, were possibly wonderful people, but had a bit of a problem with reality.

I stood in a congregation last night, celebrating ten years of a friend's priesthood.  On the one side of the altar, was a small choir, with an organist, on the other side of the altar was another local choir, with a drum and some maracas.  It was while listening to the choirs that I had a glimpse of what it was all about.  The passion and the creativity in church music is not about the church doctrines.  It's not about words or philosophy, it's not really about rules at all.  Inside an artist is a need to create and to express.  Simple.  But how does that feel? Oh the thing about creativity is that it is something quite other, quite beyond our rational mind, quite different from the need to sit down, the need to eat, the need to have a long bubble bath.  Creativity is something that is both inside us and outside us.  In order to access it - and you do have to access it - you have to give in to it, and step outside yourself to let it in and let it work with you. I think the Ancient Greeks believed that your talent, your Genius, was not in and of you, it was outside of you, a divine gift, and you had to ask for it to come to you.

It is not the same as inspiration.  If we wait for inspiration, we will never do anything. Inspiration is always just a bit beyond us, and just a little bit esoteric, and waiting for it, keeps it at bay.  Inspiration is the icing on the cake.  If it is there, fabulous.  If it is not, carry on anyway.  Creativity lives in all of us, inspiration is a gift that we can produce for ourselves by using our creativity, and the result becomes expression.  Oh and isn't expression the thing we crave?  To express ourselves, to say our piece, to be seen, heard and understood?  To express ourselves in our clothes, our choices, our friends, our reading matter, to express ourselves in our opinions?  What if you could write music to express yourself?  What if you could step aside from yourself to let in this thing called creativity, and you grasped your inspiration, and used it all make something that was a total expression of your experience and gift?  My Eureka moment was that it is not the church, the doctrines, or the stories that made such glorious music, it was something so different and so deep and so wonderful, something so God given and divine, that caused the writing of the music.  The church is a vehicle, the creativity is on a par with the divine itself.  And the expression of it, is the gift we receive.

Those singers singing with the drums in the church last night, were taking part in this divine spark by singing.  They were co operating with the whole creation/inspiration thing by expressing, and by expressing, by singing and using the music to step outside of themselves to let in that "other" that I call divine creativity, they were joining and affirming the spark that the creator of the music took and used and made something of in the first place.

I saw that it didn't matter that the words and setting were religious. I saw how God, who I do believe exists and is my personal friend, breathes creativity into all of us, and watches us ignite each other.  One person's work, by stepping aside and entering into their creativity and working with it to create, for example, a piece of music with some bongos and some local singers, is used by those singers to express themselves by singing at the tops of their voices, for us who listen and are moved to sing too, and so we all end up expressing ourselves.  So Verdi, who wrote that marvellous Requiem Mass, is giving vent to this thing that he can do, and he is doing it.  The Catholic church is his vehicle.  It's not about the church, though it is for the church, it is a direct connection to the mind and heart of God, and so beyond words and analysis completely.  My Eureka moment was that we are following religions, we are searching for meaning, we are looking for answers and we are longing for something to explain ourselves to ourselves, and the answer is in this extraordinary thing called creativity.

Now that I have this straight I can listen to church music, and be as moved as if God had leaned over and touched me with divine finger tips, and whispered in my ear, "Go Girl.  It's what it's all about, cry if you want to, wave your hands in the air, whatever.  Just shed the attitude and step into the light and let's groove".

On Work, and Play, and Mr Christmas coming for a visit.

We will divide this week's blog into two sections.  Section one will be work and section two will be domestic.  Woven into each section will be references and hints at other things, such as personal, kids, and escape routes.  And so, let us wade forth!  Courage, mon brave, it will soon be over.

Section One, Work.

Last weekend I finished the portrait of the young terminally ill doctor Kate Granger.  It was a difficult portrait to paint because Kate looks so well, and works so hard.  I am glad that it is done, and that she will now join the A Graceful Death exhibition as a powerful lesson in how someone facing their own death, refuses to stop everything and wait.  The exhibition will benefit from Kate's presence and lessons, and I am so pleased to have met Kate.  She will be writing something for the exhibition herself, adding much welly to the portrait.  I hope very much that she will come to an AGD, in the near future.

Kate on her sofa at her home.  Note the tension in her hands, and her wedding ring.  Interesting details.

Sound Workshop and Sound Bath Experience

Next Saturday, for those who can come, my friend and colleague Sarah Weller will be holding a Sound Workshop and Sound Bath here at my house.  We are raising funds for AGD, and will ask for contributions from you who attend, for the sessions.  Sarah's practice runs from Blacknest Golf and Country Club in Alton, East Hampshire, you can see her page here - https://www.facebook.com/SarahWellerAtBlacknest . Here is a taste of what we are doing, 

Sarah Weller, inspiring Sound and Drumming Therapist and Soul Midwife, will be giving a workshop as a fund raising event for the A Graceful Death Project. Sarah's workshops, featuring drums and gongs, are energising, mysterious and deeply wonderful. We are asking only for donations to the AGD Project, we will leave that entirely up to you. The Sound Bath is a glorious way to experience mystery in pure sound. It is peaceful, meditative and effective. Sarah will play her many different sound bowls while you rest, eyes closed, and feel the power of the vibrations and frequencies healing and soothing you. I will provide the necessary tea and cake, you will need it after experiencing Sarah's wonderful Sound Workshop and Sound Bath. We are raising funds for the A Graceful Death project, that enables paintings of those who are facing the end of life, to go on public display as part of a project to start talking about what it means to live, and die, and be fully alive while dying. Many of you know and have supported the AGD Project and know that without your help, I could not do the work I do. It is ongoing, as I do not charge anyone who is painted for the exhibition, just to work with them is gift and a treasure beyond compare. But I still need to fund the creation, the exhibiting and the maintenance of the project. Sarah is offering her valuable help with this Sound Therapy Workshop and I am honoured to have her support.

Sarah and I are also going to offer another screening of the film "I Am Breathing" after this workshop.  This is a powerful film of the last year of a young father with Motor Neuron Disease.  The film is sponsored by the MND Association, and we will ask for donations to that too, if you stay on to see the film after the Sound Workshop.  We are able to show the film with the blessing of the MND Association, and hope you will be able to stay and see it.  All donations to see the film will go directly to the Motor Neuron Association.

Please have a look at the page set up on Facebook and come along.  https://www.facebook.com/events/168946923282149/.  Let me know if you are coming, I will double the biscuit levels and get out the extra big teapot.  

Next week I go to visit another old friend and Sound Therapist, Sharon, to talk about AGD going to a Hospice near her.  If that comes off, I will let you all know, endlessly and repetitively, and make you all come to it.  Sharon lives in Lightwater in Surrey, you can find her on www.sharongalliford.com.  

And!  I have promised myself a day off in the studio!  A day where I can throw glitter around, fiddle with pots of paint, make paper aeroplanes and lie on the floor and sing to reggae as loud as I can.  And hoover behind all the stacks of wood I keep on the off chance that I will paint a masterpiece on one of them. This day may be tomorrow, Sunday, I feel it taking shape in my soul.   

Domestic

I am renting out my Older Son's rooms.  He has two, a big bedroom and a teeny room alongside it.  For some reason, the teeny one has captured the heart of my Polish lady who already lives here, and she has moved out of her small room to this even teenier one.  "Are you sure?" I said, and "But yes!" she said.  And so, it took her 20 minutes to move her things over the landing, and she has taken up residency as from last night.  Older Son has stopped talking to me, which is quite nice, and is camped out (with all mod cons) in the TV room downstairs.  He does have a place in Brighton but it is better here, more food.  This afternoon I have a man called Mr Christmas coming to look at the bigger of the rooms.  I wonder if he has a sense of humour.  I shall line up the whole household to look at him, we could be offering accommodation to someone we need to keep on the good side of.  If I dress as an elf, and he has no sense of humour at all, and thinks this is normal, then he is perfect for this household.  He won't notice anything.  Giant Boy tends to eat big meals in the early hours of the morning, and Older Boy is often furious.  I may be lying on the floor of the studio on his first day here, singing shamelessly along to reggae in a pseudo Jamaican accent that only middle class middle aged fairies can do.  A profound sense of humour works here, or none at all.  Just a bit of a sense of humour, and you can feel oppressed.  It needs careful navigating, this house, at times.

While mowing the lawn last week, I had to dodge the bumble bees.  My lawn is 20 % grass, 80% dandelions, daisies and other wild flowers.  "Sorry!" I kept saying to the bees, as I tried to mow in all sorts of patterns around them so that they could finish doing what they do with the flowers.  So I have left a patch of grass, about 4' in diameter, for them to play.  I have a meadow.  I have now got a bee friendly meadow, where the bees can frolic.

Where the bee sucks there suck I.

Here will be my own Dingly Dell in the making.  Soon it will have a pond, some benches, overhanging branches and weeping willows.  It is all very new, and I have found some bees not in the Meadow this morning, but on my other flowers.  I gave them a stiff talking to, and told them to not look a gift horse in the mouth.  I shall check up on them later.  Just for reference, here is Eileen photographing in the real Dingly Dell

Like Where's Wally?  Where's Eileen?

And now.  I must prepare the room for Mr Christmas.  I am painting some old furniture white, and it is in the garden waiting for the second coat.  It goes in the room I wish to rent.  And later, Sarah Weller, of Sound Bath and Sound Therapy fame, is coming for the night and we shall have our first screening of the "I Am Breathing" film.  Tonight, we are showing it to a selected audience with dinner and discussion, to raise funds and awareness of and for, Motor Neuron Disease.  That will really test Mr Christmas.  

On the Myth of Quiet Times in Bognor Regis, and Finishing Dr Kate Ganger's Portrait for AGD

The most important thing Eileen and I wanted to do this week, has not been done.  Let us recap.

On arrival last week, Eileen suggested that we sit together and write down all the things that we have achieved in the last year.  "It is good to remember all that we have done," she said, "it puts things in perspective".

"Well, that's a must," I said, "we'll certainly do that".  And so, this is the shortened version of the week past, that ended up with us not doing it.

Eileen arrived here in Bognor Regis last week, for a rest.  She works very, very hard and is also completing a degree in photography.  She had spent until 4 in the morning the day she arrived, writing a report that needed to be done.  "Welcome!" I said as I picked her up from Bognor Station, "there is a man living in the sitting room, Older Son has staged an aggressive occupation in his rooms where you were going to sleep, and the fridge is empty. You are now on the floor of the telly room and get some sleep because our itinerary begins at dawn."  A week later, we have not found a chink in the back to back schedule of meetings, visits, afternoon teas, long journeys to do things and moving the house around, to sit down and get this longed for perspective.

In the spirit of doing the thing that we have not done, remembering the things that we have done, I shall highlight just a few of the jolly things completed this week.  And it has been a jolly week!  It is true that as far as rests go, it was not a great success, but if getting things done and having afternoon teas and seeing bus loads of people here and feeding them all is as good as having a rest, well, we had a jolly good one.

Eileen and the first of our Afternoon Teas (on  different days)

The first of our Afternoon Teas was in the glorious Bailiffscourt Hotel in Climping.  I was reserved in taking the photograph here!  I took it before we began.  The next afternoon tea a few days later, at Amberly Castle in Amberly, was gone before I remembered to take a photo.  Oh these cream teas, they are served as you can see, on three layers, with sandwiches, dainties, cakes, scones and cream.  I am a stout girl.  I am a trooper.  I can handle this, but if I were to take my mother here, she would not be able to cope.  What do you do if you are not a big eater and want a fancy cream tea?  Make your own at home, I suppose.

We came to this fancy and abundant cream tea via Bridport.  Some important news follows now, so pay attention and get out your diaries.

The Unitarian Church, Bridport.  I like to pretend I live here.

In November of this year, the A Graceful Death exhibition will be coming to Bridport, to the Unitarian Church.  The exhibition will be a three day event with talks on Soul Midwifery, with workshops, and a piano concert by Lizzie Hornby who has composed a new piano piece called A Graceful Death.  Lizzie played Eileen and I this piece last week, when we went to have a meeting at the church with her, and I loved it.  Lizzie, musician extraordinaire, is so clever.  She has composed the music that accompanies the exhibition, and is a truly valued member of the team.  The new dedicated piano piece is based on a heartbeat, on the heartbeat stopping and starting again, and moving in and out of life.  Lizzie will be giving a concert for the opening event on Friday 1 November, so go and put it in your diaries now.  In fact, go and book your train tickets, check the car is free that weekend, and tell your families and loved ones that you are going to Bridport for an end of life knees up, and that someone else must feed the cat for those days.

We shall have a talk by the celebrated Felicity Warner on Soul Midwifery, we shall have an interview with both a palliative care nurse in the community and a cancer patient from a hospice, on both aspects of their experiences, followed by an audience discussion.  There will be talks on what A Graceful Death is, and the people behind the paintings.  I am hoping that Mike, who has been painted recently with Motor Neuron Disease, will come and be a star, and also that Dr Kate Granger who has also just been painted, will come too and be another star.  More about Kate in a minute.  And, of course, we shall have afternoon tea set up in the glorious bright warm huge exhibition space, on the Saturday afternoon.  Did I mention there will be a shop?  There will be a shop!  There will be stalls with wonderful, relevant and special items for sale.  It seems that you should bring the family too.  Get the neighbours in to feed the cat that weekend.  Actually, bring the neighbours and the cat, it's a shame for them to miss out.  (I do have Snowy the Cat in the exhibition;  Snowy died and his owner, the poet and academic Rosie Miles, was very sad and so Snowy joined A Graceful Death).

As this week hurtled on, ploughing through Eileen's rest time as she tried to find small pockets of silence in which to gather her frazzled thoughts, I finished the next portrait for the A Graceful Death exhibition.  Dr Kate Granger is a young doctor living in Wakefield.  Newly married, qualified and passionate about her career in medicine, Kate was diagnosed with a cancer that is terminal and swift. Instead of lying down and dying, Kate decided to continue to work and has used her knowledge, her insights and her incredible energy to help educate and change end of life practice in hospitals.  Kate has been, and is, terribly ill, and has endured much difficult treatment, but has still managed to raise vast amounts (I mean thirty thousand kind of amounts) for Yorkshire Cancer Centre.  Kate is so young, only 31, and has managed to do so much practical and long lasting good for those in her hospital, and in the medical profession itself.  It is sobering to look at the painting of the young and healthy looking woman in the painting below, and to know that she is dying and could die at any time.

Dr Kate Granger, just joined the A Graceful Death exhibition.

I am so thrilled to have Kate in the exhibition.  She said of herself in this painting that she liked the combination of her looking happy and contented but introvert and ever so slightly frail.  Behind Kate is the top of her wedding photo, her husband being one of the most important things in her life.  The wall paper is significant; she and her husband had bought it and had never got round to hanging it.  When Kate first came out of hospital from some very exhaustive treatment, her husband had put it up for her return.  Eileen and I have filmed an excellent chat with Kate, which will go onto our AGD Channel on You Tube as soon as Eileen can get a bit of down time away from me.  Bless.

(The above photo was taken by Eileen. Part of her quiet and restful week here, is to photograph all my work as I do it, from a tripod she has to set up, in a makeshift studio space she has created. The result is a stunning photograph from a dedicated professional and perfectionist.  I hope Eileen had a sit down afterwards.)

Giant Boy found a new toy this week.  Fancy Girl and her best friend came for the day to Bognor, to rest and catch up and eat, with the best friend's 18 month old and 14 week old daughters  This was a very good idea, because Eileen needs to rest, and we thought that two very small babies and lots of cooking would really help her.  Someone handed the 14 week old to Giant Boy.  "Here," they said, " have this," and passed a tiny gurgling bundle to him.  Giant Boy sat down and had a good look at this hot, squirmy, dribbling little creature, and fell in love.

"What is it?" said Giant Boy.  

And now.  Today Eileen is going home.  "I see you are rested," I said to her.  "You will be delighted that I have a picnic planned in Lewes with more friends, let's get dressed and let's go.  Hurray."  We are going to visit an old friend from our past, in his cottage in Lewes.  From there, after much mirth and eating, I will put Eileen on a train home, where her own flat will never have seemed more appealing.

I think that on our two hour journey to Lewes, Eileen and I will use the time to list all our achievements over the past year. To get that much needed perspective. "Wake up Eileen!"  I will say, "write notes!  These are my achievements, listen up, here is what I have done."  And Eileen will do so, because she is such a kind and caring friend.  When it is her time to list her achievements, top of the list will be "Going home.  I managed to go home."

It has been a busy week.  It has been a lovely week, and Eileen has enjoyed it as much as I have.  The perspective that I have gained just in the last few days is that I have good friends.  I have a very good life, I am delightfully happy, and that I must admit that though I can offer much fun and games, I cannot really, though I may think I can, offer quiet times to anyone.

On chatting to myself, and finding it a pleasure.

This week, we have a scoop!

Antonia Rolls, Artist Extraordinaire in her very early life as a fairy.  Note the expressive finger.

I am very lucky to have the chance to sit down and conduct an interview with myself.  It is not often that I can catch myself, I am so very busy rushing here and there, and it is often said of me, "... she's awfully busy, isn't she?"  Today, a stroke of luck has enabled me to catch up with the busy Artist Extraordinaire, and I am delighted to say that I have agreed to give myself an exclusive.  Thank you, Artist Extraordinaire.

Artist Extraordinaire - No, no, thank you!

Me -To begin with, I feel a vacuum in the blog world.  What happened to last week's blog?

AA - Oh did you notice?  How wonderful!  I went to Ireland for a week with Giant Boy.  We went to stay with friends in their cottage by the sea in Arklow, Co Wicklow, for a breath of fresh air to our hearts and souls.  My dear friends let me go every year to stay with them, and don't seem to mind that I follow them around like an adoring puppy until I feel great again, and go home.  This year, we were aware of the passing of time.  In the past, I have brought each of my children as they arrived, and introduced them to this wonderful family and their seaside cottage. As they got older, their friends and cousins began to join us.  Add to this my friend's children as they started to arrive, plus their friends and cousins, and you get the picture.  For the first time, this year, there was just me and Giant Boy, and my friend, her husband and their children. A tiny gathering (comparatively).  But it did mean that my dear friend and I could get on with our reading and lying around and eating.  This year too, there were wild horses around the cottage, and this is what I saw at 5am on my first morning.

A Horse.  "Morning", it said.  

We had very little internet coverage, so I just lay down on the sofa with a book, and let all thoughts of blogs, Facebook, emails and answering my phone the instant it rang, disappear into the mist and howling winds outside.  And so, there was no blog.

Me - Fascinating. And now that you are back, what are your plans for today?

AA - My plans for today!  And tomorrow!  And for ages and ages in the future are to rush about and do things!

Me - What, specifically, are you doing this weekend?

AA - Well, in a couple of hours, I am collecting my friend Claire for lunch and a catch up here.  Claire helps me with A Graceful Death, and is indeed being painted as we speak, to be part of the exhibition.  Then I am continuing to clear my Older Son's room out so that I can rent it to help pay my mortgage.  Tonight, Photographer Extraordinaire, Eileen Rafferty comes to stay for a week, so that she can rest.  Tomorrow, I am drumming in Eartham Woods with Sound Therapist and General Brilliant Person Sarah Weller.

Me - You have lodgers too don't you?  Is it possible for Eileen to rest in your house?

AA - Eileen is made of stern stuff.  She is used to resting here.  Alongside my 16 year old son Giant Boy who lives here with me, and my often visiting other son Older Boy, and my sometimes visiting daughter Fancy Girl and her boyfriend Mike, I do have lodgers. I have a Polish lady and a Sri Lankan man living in various parts of the house, and, I even have a silent Polish man living in my sitting room at the moment.

Me - You do?

AA - Yes, he flies in from time to time to work, and tends to stay on any floor space I have.  I could offer him the under stairs cupboard, and he would be happy, just as long as he doesn't have to talk to or see anyone.  As it happens, the sitting room was free so he has gone in there.  I know he is still here because I saw his change of clothes, a single teeshirt, on the sofa, and I hear the occasional noise in the dead of night as he creeps into the kitchen to microwave a single sausage for his dinner. He is self sufficient, and nice, and I call him the Silent Pole because he is so very elusive and invisible.

Me - What will you do with Eileen when she comes?

AA - I had considered giving Eileen the cupboard under the stairs, but Eileen would notice that it wasn't the sitting room.  The Silent Pole is in the room Eileen usually goes in.  So, I am making a lovely little space for her in Older Son's little side room.  He has a nice big bedroom and a little side room, which I am clearing out, as I have said, so I can rent his rooms in order to pay my mortgage.  He went to a party in Brighton last night so that made it easier.

Me - And Older Son, does he know?

AA - Possession is nine tenths of the law, and we are all very fond of Eileen, so waking up to find her in our side room, or our wardrobe, or in fact anywhere in the house, is considered a treat.  

Me - Tell me about your studio at the moment.

AA - Ah.  My studio is a place of struggle.  I love it, it is created to serve me in order to do my work, but it is a place of hard work and of making things happen.  It is a place of painting, of thinking, of writing, of planning, of gritting my teeth and getting on with things.  It is also a bolt hole, where I can hide.  I like nothing more than to have a painting on the go and to plug my earphones into You Tube to listen to hours of rain and thunder sounds.  I started with ten minutes, and like an addict, I have become more and more extreme.  I have even found twenty four hours worth of rain and splashing, but that seems a step too far.  I am afraid of listening to something so relentless.  I have only tried the ten hours sound track, and never finished it (my concentration span runs out after a couple of hours).  Only hard core hopeless cases go for the twenty four hours and find, to their horror, that after the twenty four hours of storm sounds, there is no thirty six hour sound track of thunder and lightening and cars swishing through puddles.  There is no place to go then.  I don't want to get that bad.

Me - What have you done recently in there?

AA - I have just finished two paintings of a dear friend's two mothers.  Gail Martin Stevens, Managing Funeral Director of Elizabeth Way Family Funeral Services, has a birth mother and an adoptive mother.  I have painted portraits of both mothers when they were young, and have just finished painting them when they were much older.  Gail is a Buddhist, and I have painted the images in black, brown and white (sepia effect) and added what I thought were Buddhist shades of blue and pink to each portrait.  The lotus flower links the images to Buddhism, and the white lotus flower represents "the state of spiritual perfection and total mental purity".  I am very taken with the sadness, the love and the vulnerability of both these ladies, and the choices that they made.  They are no longer with us, and Gail has been given life by her birth mother, and a future by her adoptive mother.  Both these mothers are done with this world, both have lived and learned, and have left their legacies in Gail, who is now a grandmother. It is good to honour and remember them.

Two mothers when young 

The same two mothers when old

Me - What is happening with the A Graceful Death exhibition and project?

AA - I am constantly painting and planning and organising shows and talks.  I have nearly finished the portrait of Kate Granger, the 31 year old doctor who is dying of cancer, and is using her illness to educate us all in the process of dying.  The painting is actually very good, I will finish it and get Kate's approval before making the image public.  I am beginning to paint the amazing Claire too, who I met when she was in a Hospice dying from cancer.  Claire did not die, and is a remarkable woman with a remarkable story to tell.  

But holding together all the strands of the exhibition, painting the portraits, filming and writing about the people, holding the relationships formed, understanding the experiences of being with the people I work with, is very hard to do.  I hold the whole exhibition in my head, and sometimes I don't know what to do with it all.  It feels such a monumentally important piece of work, it carries so many hearts and souls, it is full of the knowledge of life and death and it is built on love, honesty, very hard work, and kindness.  

So, I have the office part of my studio where I plan my events.  And I have the painting part of the studio where I paint.  Each is separate and each is linked.  Sometimes I feel it is too big for me, other times, I feel that I am carried along by its bigness, and it does not matter.

Me - You seem to feel the responsibility very strongly.  Can you cope?

AA - I do feel the responsibility.  I started the project.  I lost Steve, and out of that experience came the A Graceful Death exhibition and the feeling that I could, and should, work with those who are dying.   I ask deeply personal questions of my sitters about their life and death, I make them public by painting them, and I take the time I spend with each of my sitters to heart and sometimes feel overwhelmed by their strength, their vulnerability, and their kindness in joining the exhibition.  I can cope, but I am constantly made aware of my own mortality.  I do have a network of good friends who work with the end of life, who keep me grounded and wise.  It is exciting too, that the exhibition, and the raising of awareness of end of life issues, now includes new working projects in collaboration with these excellent people that keep me grounded and wise.

For example, I am co-hosting the showing of a film called "I Am Breathing" http://www.iambreathingfilm.com/  about a young father and his struggle to live and actually breathe, with his Motor Neruon Disease.  The MND Association as asked for as many people as possible to host this film to raise both funds and awareness of the disease, and my Sound Therapist friend Sarah and I are making an evening of it on the 6 July here in Bognor (in the under stairs cupboard if I am not careful).  We will offer the film, some food and a discussion for £10 per person.  All proceeds go to the MND Association.  Contact me on antonia.rolls1@btinternet.com if you would like to come.

Me - It seems that your life is not all about painting then.

AA - I have found in all my work as an artist, that 70% of my time is spent organising, emailing, talking, travelling, doing all things connected to painting, while only 30% is spent painting.  Before starting a painting, I spend time working out what would look best, and much time talking to the sitters.  And when I am actually painting, I spend huge amounts of time gazing out of the window and thinking.  In fact, I would say, that the hardest thing I ever do, is paint.  I am absolutely compelled to do it, I have set my life up around doing it, but it is not easy.  Sometimes it physically hurts me.  But it is what I am here for, and I would die half a person, quarter of a person, if I did not do it.

Me - I see the time ticking away.  I believe you have to and collect Claire, and to prepare Eileen's room and do a hundred and one other things.  Thank you for stopping to talk to us.  This really has been a scoop!

AA - No no, thank you!  Before I go, I want to post a little photo of the bracelet that I made while staying with my dear friend in Ireland.  She is so creative and talented, she is inspirational.  Her latest thing is to create metal stamped jewellery, and she taught me how to do it.  I made a limited edition, puffing and panting, of Affirmation Bracelets. Most of my efforts to do this ended up with wrong spellings and sentences like Yes Plose instead of Yes Please.  That is why they are a limited edition, only a few of the bracelets ended up making sense.

And now, it is time to rush off and collect Claire.  Lunch Claire?  Oh, yes plose.

On Being Only Human and Woken Early With Ketchup and Tea

It's my own fault.

I have been getting up very early to cycle around the by lanes and country roads in Bognor and surrounding areas, and boasting about it.  "Guess what I do?"  I say to people as they are introduced to me.  "I cycle," I continue before they can reply, "at about 5am every morning because I love it and there are no cars and I am back and bathed and ready to get Giant Boy up by 7."  The sub text is "Beat that."

Road signs from an early morning bike ride  around  Bognor.  This sign tells us to beware of ducks on bendy roads

But I am only human.  The early morning bike rides are beginning to make me very tired, but I feel duty bound to continue.  Recently they have been slacking, but I have not wanted to tell anyone in case they stop thinking I am amazing.  As I lay in my bed last night, I decided it was at last time to sleep late, to give in, and abandon any thoughts of cycling in the morning.  I would not even wake in order to have a painful debate about whether I should go or not, and then not go.  I would simply say to myself as I closed my eyes and drifted off to sleep, that cycling is off, it is cancelled, it is kerput.  To emphasise the decision, I closed my curtains.  Normally I wake with the light, and like it that way; closing the curtains was a statement of intent, that I would slumber late, until the withdrawal from tea kicked in.  It was all so simple and so glorious.

I left Giant Boy with friends downstairs.  How sweet, I thought, my baby has some friends to play with.  Giant Boy is 16 and six foot six inches, he doesn't do very much at the moment, he is working out how he got this big and tends to lie down a lot.  Having friends over meant he was feeling a bit more normal.

At 5am I was woken by a vigorous knocking on my door.  Giant Boy was outside, a beaming smile on his face, cycling shorts on, a tray of food in his hands, and another on the floor beside him. "Arise, Mother!" he cried," I have brought you breakfast, and we shall go riding together!"  His face said "Love me, pat me on the head, throw me a stick, I want to play" and my face said, "Where is God when I need him?"

We sat on my bed, the curtains drawn, and he told me that he had not been to bed yet.  He had, he said, looked out at the rising sun and felt such peace and wonder, that he decided to join me for my early morning bike ride.  So he made us breakfast, and looked forward to an early morning jaunt, bonding with his showy offy mum.  He handed me my tray, with a pot of tea, a doorstep of toast and butter, a flapjack and some ketchup.  "You can share my soup", he said, and on his tray he had a bowl of tomato soup, some scrambled eggs, some pasta with cheese sauce, some added spicy salsa dip, and some lettuce.  "Where have you been if you have been up all night?" I asked, concerned and confused, and received no reply.  He had keeled over and was asleep on the pillow next to me.  I put the trays on the floor, covered him up, and got back into bed.

It is different with someone sleeping next to you when you had planned not to have someone sleeping next to you.  Fitfully I dozed, wondering how it was that I was no longer resting and feeling I was having a treat, wondering what it was about having a giant teenager snoring next to you with bits of lettuce stuck to his teeth in the very early morning, that changed the atmosphere.

And then the phone rang.  Oh, I thought, an early morning call means trouble!  It is Other Son, who is known for getting into pickles with last trains to anywhere, and I braced myself.  "It is your Mother!" said a happy voice at the other end of the phone, "I know you get up early to cycle and I am up at dawn this morning myself, so I thought I would call you for a long and detailed chat and bond with you in the early hours."

Culprits.  Looks like they planned it all doesn't it?  Giant Boy and Grandma.  Butter wouldn't melt in their mouths. 

And so, today is different to how I imagined it would be.  Isn't life like that?  Mother is happily doing her thing ("I slept so well", she said, "twelve hours of peace and I feel so wonderful now") and Giant Boy is upstairs in my bed dreaming of poetry, dawn, pasta and lettuce, and being nice to his mum.  I, not being beaten, am cycling to my friend Claire's house, where she will tell me it isn't my fault, and that I am still amazing, and that cycling 300 yards to her house is just as good as having done a few miles at dawn.

At the end of the day, Love Handles! And an interview about Motor Neuron Disease.

Today, Fancy Daughter and her boyfriend, began a two day extravaganza of odd jobs in my house.  I gave Fancy Daughter my debit card and a list of things to be done, and told her that she could choose the colour of the bathroom as I hadn't time to think.  Mend the lock and handles on my studio too, I ordered them, and you decide what kind of lock.  Fancy Daughter put on her lipstick, dusted the Boyfriend down, and went off to B&Q with a glint in her eye, to decide what was best for me.

Fancy Girl and the Boyfriend starting work in the house in a serious and modest manner.

"Go", I said to them both, "and do your thing.  Today I am deeply busy and cannot be distracted, not even for a moment."     

Eileen Rafferty, photographer extraordinaire and dear friend, is staying this weekend so that she and I can film a conversation with Julia and her family, in their house in Dorset, for the A Graceful Death exhibition and project.  We arranged to go today, despite it being very hard for Eileen to get away from London, because Julia is deteriorating fast and speech is becoming more and more difficult for her.  Julia has Motor Neuron Disease.

I have just finished a painting of Julia, and in the time that it took to do the painting, Julia's health has declined steadily.  Julia has still much to say, and has the support of her wonderful husband, Barry.  Both agreed to be filmed talking, and to show us what it is like to have, and be in the presence of, someone with MND.  Eileen filmed about one and a half hours of the most profound and moving conversations, revelations, laughter and tears.  We were joined by Julia and Barry's twelve year old daughter Elizabeth, who has found the process of her mother's rapid decline both frightening and unbearable.  She has not been able to talk to her mother, not knowing how to, and finding Julia's decreasing ability to speak and move, confusing.  I think Elizabeth has found it easier to keep away from her mother, and to keep her feelings to herself. Despite having much support from her school, Elizabeth has been deeply troubled and has felt isolated and alone. Julia has watched this and has been unable to instigate anything, and as a mother, has longed to talk to her daughter and tell her that nothing that Elizabeth says to her, is too much for her.  Elizabeth, as she spoke, revealed that she did not want to upset her mother by telling her how she felt.  She felt that she had to be strong for her mother.  I think too, that Elizabeth, understandably, does not know herself, how she feels.  She does not like to see her mother's decline.  It is difficult, said Elizabeth, to get up in the mornings.  She does not want to see more evidence of the MND by the time she returns from school.  It frightens her, and she does not understand the way the disease is changing her mother, her family, her life and causing everything that was safe, to become unsafe.

Julia may not be able to speak clearly any more.  She may take a long time to say a few words, but she is still a mother, a loving and devoted mother, and a mother who watches and understands her children, even as her body is no longer working for her.  I was moved by Julia's love and understanding today of the fear and loneliness of her daughter.  There were many, many heart rending tears, and many frustrating attempts to make herself understood.  And I was so touched by the simplicity of the need for Julia to have her daughter come to her and talk, and by Elizabeth's pain and fear of her mother's illness taking her away from her.  And too, by Elizabeth's obvious love of, and pain at, loosing her mother.

Julia's husband Barry is patient and kind, supporting Julia and listening to Elizabeth.  Barry works hard to support the whole family, they have an older son too, and Barry does his best, and more, to understand, look after, and be there for all of them.  But it takes its toll on him too.  He appreciates and needs the help of the many professionals who come daily to help with Julia's needs, but he feels that his family is somehow slightly out of control and no longer private.  It is hard, despite the gratitude he feels for the help and advice that they receive, it is hard to see his wife so helpless and needing round the clock nursing from so many different people, some of whom are total strangers. The conversations that we filmed today will show how much time we need to give to those with Motor Neuron Disease, and their families, how it is essential to take the time to communicate.  I watched Julia, clever, intelligent, wise Julia, point out letters with her eyes in order to spell out a word when she could not get her mouth and throat to say it, to tell her daughter that she understood how frightened she was.  

Here are some of the things that Julia says to remember with someone who has Motor Neuron Disease

1. Be patient. Be Patient.
2. When you don't understand what she says, tell her.  She knows when you don't understand.
3. Let her finish what she is trying to say.  Don't finish her sentence for her in a hurry and think you have got it right.  Don't guess what she is trying to say without asking if it is correct.  Let her speak.
4. She cannot move, she is dependent on others for everything, but her mind is as sharp as ever.  She is still in there, thinking as fast as ever.  She is not mentally disabled too.
5. Don't be afraid of her tears.  They are part of her and they need to be expressed.  (Sometimes Julia cries deeply and loudly, and Barry is gentle and loving and so very kind with her).
6. Once again, be patient.  Give her time, let her have the time to speak, to communicate.  Take time to be with her.

Barry and Julia.  This photo was taken in March.  Now, in June, Julia has lost a good deal of weight and has a neck brace, a PEG feeding tube directly into her stomach, and  an oxygen mask for a much of the time.  I am tempted to paint her again, she is such a beautiful and wise soul.

Eileen filmed the conversations with her usual delicacy and discretion.  I prepare questions in advance for these interviews, but rarely have to ask them.  Today, the family were incredibly honest, articulate and brave,  talking about the way that they are living with, dealing and not dealing with, Motor Neuron Disease.  It is an absolute lesson to me, who knows nothing about how to live with a terminal illness, of the reality of life, death  doing the best you can with what you have.  It is difficult to say what I learned from being with this family today.  I was shown something far bigger than me. This is a normal family, an every day family, dealing with dignity and grace, sadness and patience, with something not normal at all.  They are dealing with the steady, visible, unstoppable terminal decline of Julia, mother, wife and much loved lady. 

The painting of Julia for A Graceful Death, finished a few weeks ago.

I have asked Elizabeth if she wants to include her drawings in the A Graceful Death exhibition.  I have not seen them, but she says that drawing helps her to get through difficulties.  I hope she does, her drawings will be very valuable and very good for children who are going through the same thing.

And so.  After two hours of filming, Eileen and I left to go home.  Everyone was exhausted.  Eileen will edit the film and it will be made into smaller films, maybe more than one, and put up on our A Graceful Death channel on YouTube - http://www.youtube.com/user/AGDChannel.

Meanwhile, back at home Fancy Girl and the Boyfriend were tackling all my odd jobs and bits and pieces around the house.  Remember the request from me to put a new lock on the studio door?  And new handles?

I got, it seems, love handles.  

And the bathroom is painted hot turquoise.

And they stopped during the hot afternoon to set up a large barbecue, which took them far longer than they had anticipated.  There was so much to eat that it cut into the time spent doing the bathroom but hey!  That's OK because they washed up!  I thanked them, and searched in vain for any of the left over food from the barbecue.  "None left!" they said gaily, "except for a lettuce leaf which you and Eileen can share between you."   I thanked them again, and putting the lettuce leaf into the bin with a merry little hum, put the kettle on and got out the chocolate.